Brain surgery gave Barry Norman's grandson a new life

In three per cent of cases it is caused by a lesion on the front temporal lobe of the brain.

Two years ago, at the age of seven, film critic Barry Norman's grandson, Bertie, underwent a critical operation to remove such a cyst.

Despite a 30 per cent risk of brain damage, it was successful.

Here, his mother, radio journalist Emma Norman, who no longer lives with Bertie's father - although he sees him regularly - tells her son's story.

When Bertie and his twin brother Oliver were born in November 1993, they were 14 weeks premature and tiny, weighing just over 1lb each.

They were both put on ventilators because their lungs were so underdeveloped, and they were in intensive care at Addenbrookes Hospital in Cambridge for months.

Bertie was allowed home at 12 weeks old, but sadly his brother never came out of hospital and died three months later.

Bertie progressed brilliantly - from a tiny baby who had struggled so hard to survive, to one who grew healthy and strong. He still had occasional chest infections because his lungs were weak, but other than that he did exceptionally well.

Vacant

I didn't notice anything was wrong until he was three. He asked for a cuddle, and as he was sitting on my knee I noticed he suddenly went vacant.

His eyes were staring ahead and he didn't seem to be registering anything.

It was something only a mum would notice in her own child. My father, Barry, is very close to Bertie - but even he didn't notice anything at first.

I took him to the doctor, who suggested an

MRI scan of the brain, and it was then that they discovered he had a tiny cyst-like growth on the front temporal lobe of his brain.

I was devastated that my son, who had fought so hard after his premature birth, should now be facing this. I was still reeling from everything that had happened, and as it wasn't linked to his birth at all it seemed doubly unfair.

Initially, Bertie was prescribed medication to try to control his seizures, which we were told was DNT (dysembryoplastic neuroepithelial tumour) epilepsy. At first, I didn't realise how rare this epilepsy was.

Uncommon

Doctors told us it was an uncommon, slow-growing lesion, and they perform only ten such operations each year, so it was daunting knowing that Bertie was one of those few.

He was monitored at Great Ormond Street Hospital in London and doctors discovered he was having up to 30 'fits' each day, and the same number at night. Some were fleeting, but others would leave his small body shaking.

I watched my son wired up to all the machines as doctors did their tests, and I was so proud of him. He's such a fighter, and I knew he would come through it.

I knew the only option left was to have an operation on his brain to remove the cyst. There was a 70 per cent chance of success, but also a 30 per cent chance that he would be left with some brain damage.

Luckily, the doctors took the decision out of my hands, and they decided Bertie's best chance would be to operate. I was so glad they did - it would have been so hard as a mother to have made that decision when there was a risk of causing him brain damage.

Broke down

But when they wheeled him away for the operation, I broke down and cried. His hands gripped the side of the trolley and his face was as white as a sheet.

Dad and my mother, Diana, came to the hospital and were a tower of strength as we waited five hours for Bertie's surgery to be over. It seemed an age before eventually they brought him back to the ward and said the operation had been successful.

After he had recovered, Bertie was allowed back home, and dad would come up to Cambridge from London after he'd been recording his evening television shows to stay with us and give me support.

My parents have been incredible - I don't think Bertie and I could have done it without them. He just loves his grandad and they get on really well.

Dad was devastated when Bertie had to have the operation, and we are all delighted he has done so well since.

All clear

Two months ago he was given the all-clear after an MRI scan at Great Ormond Street, and he is shortly due to come off his medication altogether.

He hasn't had a single seizure since the operation, so it really seems to have worked. Thankfully it's also been a huge success as there hasn't been any sign of brain damage. I knew that was a risk - but it has been a risk worth taking.

Now Bertie loves running around our garden at home in Stevenage and playing in the tree house that his grandad painted for him. It's such a wonderful sight to see.

He's catching up like wildfire with his schoolwork, too, and he's just like any other healthy nine-year-old.

The doctors have done a wonderful job, and we can't thank them enough. They have given my son his life back.

EPILEPSY - THE FACTS

Epilepsy is a common brain disorder characterised by recurring seizures, which are triggered by a sudden interruption in the brain's highly complex activity.

It can develop at any age, although it is diagnosed most often before the age of 20 and after the age of 60.

New research from experts at Great Ormond Street Hospital in London has now revealed that a special diet can help to dramatically reduce or end seizures in children.

The study, carried out on youngsters who had proved resistant to drug medication, looked at the benefits of the ketogenic diet - high in fat, low in carbohydrate.

Of the 14 who had been on the diet for three months, more than half had seen a 50 per cent reduction of seizures and in four cases, they were reduced by 75 per cent.

The hospital is now recruiting more children to take part in the continuing research, although a referral from their local paediatrician is needed.

For further information and advice on the Ketogenic diet, contact the Great Ormond Street website on www.gosh.nhs.uk